Q: When is healthcare not healthcare.
A: When it's a constant fight to get appropriate treatment.
When acute healthcare is required from our NHS system it's pretty top-notch, and here I only speak from my own experiences. If you have a simple and obvious problem, the wheels turn quickly - here is a problem, there are the immediate and obvious solutions. For instance, when I had appendicitis my symptoms were straightforward classic ones, a few hours from the sudden onset of extreme, severe stomach pain and projectile vomiting, a bit of prodding and poking around my lower right abdomen, and my condition was diagnosed and the solution, an appendicectomy, decided upon. I had a reasonably straighforward and common surgical procedure, but none-the-less one that probably saved my life, the next day and was home within a week. Simple.
Chronic illness is an entirely different matter. What we know now medically compared to 10 years ago is, well, lots more. 10 years from now we'll now lots more still. The body is incredibly complex, and the truth is that however much we already do know, and that's a lot, they is waaaaayyyyy more to find out, and a plenty we may never know. But the medical profession keeps trying, it keeps evolving and learning, it's moving forward. There are more specialists, more studies and research being performed, and more data collated to gather the information required for us to get a clearer picture of what is going on is the bodies of people who are suffering from chronic illness.
I am struggling at the moment to get our consultant at the local hospital here in Brighton to open his mind to the posibility that he might benefit from the input of the doctors that have seen her in the Royal London Hospital's Centre for Digestive Diseases. He works in an acute hospital and had little understanding of the condition that the Royal London doctors say that Ellie is suffering from, and has been dismissive of their specialist knowledge to a degree that to me (although I agree I am by no means an impartial observer on this) seems unprofessional.
When your child becomes ill you expect the hospital and it's staff who are caring for them to be totally focused on doing what is best for that child, open to help and knowledge shared with them by others that may provide a more positive outcome for that child. What you do not expect is decisions to be made by your child's consultant with refusal to accept, or even contemplate, that their diagnosis may (or may not) be entirely accurate without listening to the opinions of others that may have had more experience with children with unusual or rarely seen conditions such as the one Ellie may (or may not) have.
So we find ourselves in conflict with Ellie's consultant here in Brighton. If this whole, horrendous, heart-breaking experience wasn't enough - seeing our daughter suffer constant pain, deteriorating physically and mentally, suffering bouts of dangerous malnutrician, having to bear the constant insinuation that it's all in her head when she desperately wants nothing more to be well again - we have to fight with her doctor to persuade him to consider allowing the input of another department, a specialist one from another hospital, to help us all determine the most appropriate treatment for her.
I don't know what the future holds for Ellie, or the many, many children out there going through similar experiences, but I hope that sceptisism, arrogance and pride amongst those less open to the sharing of knowledge between healthcare staff doesn't leave the NHS as chronically ill as my child has become.
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